Shunt malfunction help

[mulberrylane]

Hey All!

I was at the Neuro on Friday with my 16 month old son for his 1 year check up for his shunt revision. After the neuro had looked at his CT he said that his ventricles were actually enlarged and that if he (son) hadn't been doing so good that he (neuro) would think that his shunt was malfunctioning?!?! Then he said, keep an eye on it and let us know if anything changes and we'll see you in a year.

So now, I am totally paranoid. Any thought/advice? Obviously the neuro wasn't too worried, but now I keep questioning sons behavior. Maybe he has been more fussy and maybe he isn't eating like he used to?!?! AAUUGGHHH!! It's just so hard to know what to do sometimes!

I know it's different for each person, but can anyone tell me how your child acted before a shunt malfunction? What signs did you notice?

With our first revision, son was only 12 weeks old and there were no signs. The neuro noticed it during his 2 week check up of the initial placement.

Thanks for any advice/info!!

[Dodger67]

As I understand it the definitive symptom is Sunsetting.

[Jilleyann]

Oh boy, panic mode, I'm sorry for that news, that's all a mother needs is some alarming news and then 'see you in a year!'

As far as symptoms all I can tell you is what I've researched during my times of panic and questioning. (Pretty much every time Madison sleeps too much, acts fussy all day, throws up, blinks funny, or sneezes four times in a row...I rush her in for a shunt series. I'm not much help on the don't panic portion of this for sure) ***On a side note not once has it actually been a shunt malfunction, at least since I've taken her home, thank God, but did I feel stupid or over-reactive? nowai*** What I've gathered to look for is vomiting, (also any of these sings are on a 'more then usual' basis, if theres a usual..) sleeping or being unusually tired, and a change in mood or behavior like not being able to be pacified. le, sigh.

My true suggestion for you is to go the extra mile and take measurements of his head, recording your findings daily, twice daily even, to see if there is a general increase in size. To make this as exact as possible you can mark where you put the measuring tape, on the side and/or back of his head, so that you are measuring the same angle every time and theres less of a fluctuation in measurements. This may sound like a little much but its WAY EASIER then monitoring a babies behavior for clues and always wondering whats a sign and whats just 'normal'!

Best of luck to you, I keep shaking my head because I know if I was in your shoes I'd be a head measuring, hours slept counting, X-Ray demanding mess, but the best advice I've gotten is to put some faith in the doctors, if your Neuro isn't stressing out about the enlargement try your best to do the same, don't spend too much time worrying about signs and symptoms, by the time your fear is over your baby could be almost 2 and you've missed out on some great times! Enjoy your boy while he's young enough to be enjoyed (hehe) and put the rest in God's hands, measure his head and then just be a mom! Best of luck to you and keep us posted ^.^

[valmarie]

Wow, that is a little scary for me following my recent experience! My son has had BAD luck with his shunt. He's 18 months and just had this THIRD revision due to an occlusion. He was hospitalized for what they thought was a severe UTI but after 2 days of antibiotics he was still sleeping ALL the time, fussy if he woke up, not eating, not drinking, and threw up a few times. I knew something was not right. The CT scan they took showed a .4 mm difference from the previous one another time and it was so minimal they nearly blew it off as a measuring error. What got my doc was the fact that the ventricles were a bit bigger. As soon as the neurosurgeon pressed on the valve of the shunt she could tell it was occluded and off we went to surgery at 1:30am! He was a different boy within HOURS of the surgery and has been great ever since. I don't tell you this to scare you...I think that most of the time you will have some telling signs. And I don't think they will be subtle. Your momma gut will let you know so just listen to it. I went through nearly a week "wondering" if something was wrong with my son when I saw him just a little fussier and less playful than usual. When he threw up twice in a day and started sleeping I figured it was a stomach bug but gave my doc a heads up. When he started waking up crying from his sleep the next day I rushed him in knowing something was NOT right. And so it began. I am praying that things are fine for you...but this is what we are all here for, right? To support eachother, encourage one another and help eachother through to the other side!

[XoBLoNDiE85]

I would have them do some head ultrasounds (if still possible) or CT scanned for a couple weeks to watch his ventricles if the neuro is saying he thinks his fine. My daughter have ZERO symptoms other than they had been watching her ventricles for quite awhile making sure everything was working right...we ended p in a revision. You and your son are in my prayers.

[cadon's mum]

Cadon is 19 mnths and on his 3rd shunt. The first time it malfunctioned he vomited once and just seemed a little off, when we measured his head it had increased by 2cm in a month. The second time was the day after his first revision , we were still in the hospital, he vomited and then went floppy in my arms , his clothes were cut off in front of me and he was rushed to theatre. He had suffered a large bleed and a clot had clogged up his shunt, i am so thankful that we were still in the hospital and were able to get him into theatre so quickly it still frightens me to think what could of happened if we had been discharged and were travelling home.

[Kari]

Our main symptoms have been fussiness and vomiting.